In 1982, I was diagnosed with UC (Ulcerative Colitis). Flare-ups and downs continued for the next 10 years, and things then started to get progressively worse. From 1996 to 2006, I can honestly say my life became a nightmare. Between my sense of urgency regarding BMs and the countless number of embarrassing and near-harrowing situations I would find myself in, you would think I would have welcomed any type of surgery... But no, not me. I will never have surgery, was my thought (having sunk into a deep depression that whole time and not even knowing it). It was only after having lost everything that I ever cared about in my life - family, wife, money, job, career - and at what I thought was the end of my rope, did I entertain the J-pouch surgery. (My journey mirrors the bottoming out an alcoholic experiences before they begin their rebirth.) Well, the J-pouch proved to be a nightmare too, and then 3 months later, permanent ileostomy... and that now has become my second birthday - July 19, 2006. I have been reborn from the ashes of this disease, truly. Wow, am I ever appreciative and happy. I never thought it could be so, and I currently can't scream it loud enough for all the world to hear and see. This is a happy ending for me. Know that what I thought would be the end of my life - getting an ostomy - has proven to be the complete opposite. I have gotten my old life back (healthwise), and I think I got an extra three lives thrown in. I have so much life now I don't know what to do with it all. LOL Michael
I understand exactly what you are saying. My quality of life was so bad. I had a young child that I would have to leave with strangers when we were at the beach because I had to run to the bathroom. My blood levels were so low I had no energy for anything. I had to starve myself at work to be able to work. A good friend died of cancer because she refused to have an ileostomy, a day before I had mine. I have had a permanent ileostomy for 10 years now and it is not the end of the world. It was the beginning of getting my life back.
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 33,370 members. Get inside and you will see.
It's not all about ostomy. Everything is being discussed.
Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.
Privacy is very important - the website has many features that are only visible to members.
Create an account and you will be amazed.
I had UC in 1984. I was saved from surgery with drugs. But I had a major flare-up in 1990 and, after countless trips to the toilet (about 20 times a day) and losing blood, I had to have all my bowel removed. I wasn't very happy about it, but now I just think about all the suffering I went through with UC and it makes it all worth it. - Noel
Learn more about caring for children with an ostomy on vacation.
A big clap for you. Enjoy your new life.
I have a 20-year ileostomy and I wanted to die when the doctor told me that I have to carry a bag for the rest of my life, and now I think it was a second chance to live without rushing to the bathroom and those horrible pains, but now I enjoy every day and thank God for this kind of surgery.
Good luck, Michael.
Hello, well let's see, I can't chat the other way so I'll try this... A doctor screwed me up... Blunt but to the point.
I would love to talk to you when you get back. I am still a newbie one month out and not feeling so happy....Tell me your tricks..I haven't left the house much. I don't really know what to expect....have a great time sounds like you deserve it... Faith4todaymayBtomorrow
Hey Michael, how are you? I read your message and it says that you sent me an email. I've had a look but I didn't receive it. Also, has anyone ever told you that you are a very handsome looking man? Hope to hear from you very soon. Take care, Michael. Bevck41... :))))))))
Just read your blog and can totally relate to it. My op was done as an emergency and I took a long time to deal with it. I suffered a lot from low self-esteem and had problems with body image, etc. It took a while, but I am glad to say it beats being ill all the time. I've been able to do things that were impossible before. I now feel like I've got my life back and can enjoy it. Glad to see you're doing well and are also enjoying life again. Take care.
Beyondpar, I am very pleased that I got an ileostomy in 1999. I was so sick I couldn't eat or drink anything 4 hours before leaving my home. I felt better 2 weeks after my surgery than I had in years. There are times I forget I even have an ostomy. I am very thankful for being healthy. I work in healthcare and see some pretty sad things and some very chronic people. I think every day, I used to be like that. It is also nice to talk to other people with ostomies. My support group mostly has elderly people and they have no clue what it is like, especially to be back in the dating scene, which has certainly changed in the last 25 years.
Beyondpar, I am very pleased that I got an ileostomy in 199. I was so sick I couldn't eat or drink anything 4 hours before leaving my home. I felt better 2 weeks after my surgery than I had in years. There are times I forget I even have an ostomy. I am very thankful for being healthy. I work in healthcare and see some pretty sad things and some very chronic people. I think every day, I used to be like that. It is also nice to talk to other people with ostomies. My support group mostly has elderly people and they have no clue what it is like, especially to be back in the dating scene, which has certainly changed in the last 25 years.
Hi Beyond Par, I like your blog. I tried to reply to your message but the site will not let me.
Hi Beyond Par, I like your blog. I tried to reply to your message but the site will not let me.
Everyone on this site has such a great attitude. I really needed to see this. Thanks for your story, Michael. D.
I remember the misery of the internal pouch well, all the soreness, finding out where the nearest loos were if I ever went out. I was one of the first operated on over here for that procedure and a right mess up was made of it according to the next surgeon who transferred me to the stoma in 2006. That takes a lot of getting used to also.
They said "take a bag with you when you go out". Me, in my innocence of the situation, thought they meant just a clean colostomy bag. I didn't realize they meant a carrier bag, complete with everything, plus a whole change of clothing! Now when I go out, I might forget my reading glasses, my money, or the dog, but I never forget "THE BAG"!!
Hey, what a nice-looking bag. What brand and model is it, if I may ask? I'm wearing a hideous, clear plastic thing that I wouldn't want to show the world, even when it's scrupulously clean.
I'm so glad to hear of your great happiness after the ileostomy. I had anal cancer and told the doctors I would rather die of that than have a permanent colostomy. They told me how life would progress towards that death... loss of bowel continence... diapers... more pain than I was already suffering... and more bleeding... and I decided maybe a bag would be tolerable. I had surgery July 29, 2010.
Frankly, I've had a hellish time with pain and other complications since the surgery, but I think I'm finally seeing the last of those. I had a pelvic abscess that had to be drained... I'm wearing the bandage over the wound from that, but the drain is out and I'm not having nearly the pain I had, upon sitting. There was a lot of pressure because of the weight and location of that very large collection of fluid (pus) in the abscess, right above the site of my removed anus.
I have a feeling I may become as excited as you are, once all the pain subsides. I have to have six months of chemo, but the doc said he'll be giving me pills, instead of an intravenous chemo. No hair loss, no nausea... just maybe some dry skin and diarrhea. Diarrhea is a real annoyance with the bag, but at least I'll have the bag... instead of the urge to find a bathroom. Of course... if the bag keeps filling up, I'm still going to have to be near a bathroom...
I lost my job... But I'm hopeful I can find another one.
I have an adult daughter with Crohn's. She may need an ostomy one day. We hope not. But now that I am surviving with one, she thinks it wouldn't be as bad as she had thought.
Michael,
Share a related experience with the problems such as depression, etc., and losing everything in the process. I am so sorry you went through all this and want you to know you weren't alone in your suffering. I too got my life back after my ostomy, and I thank God every day for the chance I have to live again. You stay strong, Michael, and remember if you ever need a shoulder to lean on or cry on, a listening ear, someone to talk you out of boredom, or just a friend to be there, just yell my way and I will come running.
Karen